Opiates and Ehlers-Danlos

Opiates and Ehlers-Danlos: When “Standard Care” Becomes Harm

For those who don’t know me: I am the parent of two children, aged 12 and 14, both living with Ehlers-Danlos Syndrome and the many complex, often misunderstood conditions that accompany it. This story is about my son.

My son is autistic. For him, this means he needs support to understand and navigate a world that is often overwhelming and unpredictable. Pain, sensory input, fear, and stress are processed differently in his body and brain. He experiences pain more intensely and in ways that do not fit the medical definition of “normal.” Still, he is a wonderful child, intelligent, witty, and full of humor.

We live in the Netherlands, a country where meaningful, knowledgeable care for Ehlers-Danlos Syndrome essentially does not exist. I realized this when my children were still very young. As a result, I became their teacher, advocate, and safety net. I taught them coping strategies through play: how to breathe, how to regulate their nervous systems and one rule that surprises many people: no opiates.

That rule did not come from fear or ideology. It came from physicians who understood EDS. Opiates pose serious risks for patients with connective tissue disorders: altered pain processing, paradoxical reactions, autonomic instability, masking of injury, and increased long-term harm. For a neurodivergent child with EDS and POTS, those risks are magnified.

Last week, that preparation was put to the ultimate test.

My phone rang. I assumed my son needed to be picked up from school because snow had shut down the trains. Instead, someone from Dutch Railways was on the line. My son had fallen down a staircase at a train station hard, uncontrolled, and violently. An ambulance was already on the way.

The drive to the hospital felt endless. There is no nearby emergency department where we live. When we arrived, the ambulance crew was still there and explained the situation. They did not yet know the extent of his injuries. But one thing stood out to them: my son had accepted only paracetamol and had refused fentanyl. At the hospital, he also refused morphine.

This was not panic. This was learned, intentional self-advocacy.

Still immobilized on a spinal board, frightened and in severe pain, he relied on the tools he had been taught. When we were finally allowed to see him, every instinct told me to touch him, to comfort him physically. But I knew better. For him, touch in that moment would worsen the overload.

Before imaging was even completed, we were repeatedly asked to consent to morphine. We declined and asked to wait for the scans. I suggested ibuprofen as an interim measure. This suggestion was met with visible hesitation, because it fell outside the automatic protocol.

At some point, a nurse asked my son where he had learned to breathe like that.

The answer is simple: practice. Every day. Through play. Through necessity. Through survival.

The scans showed no fractures to his spine or neck, and he was removed from the spinal board. Almost immediately, he went into tachycardia. My son has POTS. Trauma, pain, fear, and prolonged immobilization are known triggers. This was predictable.

A staff member suggested treating his POTS, what a bright lights.

I nearly laughed from disbelief.

An IV fluid bolus, one of the most basic, evidence-supported interventions for acute POTS decompensation was never given. We were moved to another room. The suggestion vanished. So did any plan to address his autonomic collapse.

He was discharged with a shoulder injury requiring orthopedic follow-up and a concussion. By Dutch standards, this meant he was “fine to go home.” The fact that his POTS had worsened to the point where he continued to faint was dismissed. He was told to drink more fluids and eat salt.

Here lies the contradiction that should anger every EDS patient and advocate:

Medical staff were ready, eager, even to administer morphine to a neurodivergent child with EDS, before knowing whether he had fractures. Yet providing IV fluids to stabilize a known autonomic condition was considered excessive.

This is not patient-centered care.
This is protocol-centered care.
And for EDS patients, protocol often equals harm.

“First, do no harm” is not upheld when clinicians refuse to adapt, refuse to listen, and refuse to treat the whole patient rather than the chart.

For those of us in the Ehlers-Danlos community, where many of you fight similar battles, this story will sound painfully familiar. We are expected to accept dangerous medications without question, while basic supportive care is denied. We are labeled difficult, anxious, or noncompliant when we advocate for ourselves or our children.

There is still a long road ahead.
A very long road.
And until EDS patients are believed, understood, and treated with informed care rather than rigid protocols, stories like this will continue to happen.